Where caregiving is a family affair, Alzheimer’s places a heavy burden on children and spouses

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HARLINGEN, Texas — Here in the Rio Grande Valley almost everyone knows, or cares for, someone with dementia. It’s not a surprise. The region has some of the nation’s highest rates of the disease. But what’s less appreciated is the enormity of the burden carried by the mostly Mexican American caregivers. In a culture where caregiving is a family affair, it’s almost unthinkable for children and spouses to place loved ones in nursing facilities or ask for outside help — even if those options were affordable.

Paula Barrera spends most weekends taking care of her 93-year-old mother, who still lives in her own home here near Brownsville. Romeo Luis Escobar helped care for his mother for nearly two decades after he realized something was wrong. She’d started putting eggs and lettuce in the freezer.

“In Hispanic culture, the family is really important,” said Escobar, who shared caregiving duties with his six siblings until his mother died earlier this year. “My siblings and I never entertained the idea of putting mom in a nursing home.”

Escobar, an assistant professor of social work at the University of Texas Rio Grande Valley Medical School, is one of the researchers here who is studying Mexican American caregivers, a population that has largely been neglected, like Hispanics in general, in research studies.

One of the few was a 2008 study, which found that 63% of Hispanic caregivers were in “high burden” situations, providing care for more than 50 hours per week, compared to 51% of non-Hispanic caregivers. Today, an estimated 1.8 million Hispanic people take care of relatives with Alzheimer’s. That number is expected to increase substantially as the nation’s Hispanic population grows and ages.

In a pilot study he recently completed, Escobar found Mexican American caregivers were severely burdened by care duties, but largely could not afford, or did not seek out, formal care options or outside help.

That’s true for Barrera, even though caring for her mother is difficult to balance with her job. A promotora, or community health worker, Barrera hires someone to help care for her mother while she works, but usually spends weekends, when that employee is off, at her mother’s home.

Her mother, Carlotta, immigrated here from Mexico when she was 75 and never worked in the U.S., so she doesn’t qualify for Medicare or other services. “She doesn’t get any help at all,” said Barrera, who struggles to manage her mom’s many serious medical issues, mood swings, and dementia. “It gets kind of scary,” she said.

The new research center here highlights the needs of, and offers education programs for, caregivers, or “care partners” as the center’s director, Gladys Maestre, likes to call them. She organized what she calls mini-med schools to teach caregivers more about the disease and the medications they give out, and plans a larger, peer-led effort where care providers can learn how to take accurate blood pressure readings and wash the hair of a person who is bedridden, and what to do when someone in their care is dying.

“When you see research that says, ‘We recognize caregivers are a vital population,’ that’s a big deal, because this is an invisible population,” said Jason Resendez, a Mexican American expert on family care who is president and CEO of the National Alliance for Caregiving and grew up in South Texas watching his mother care for his grandmother in their home.

Escobar has found it difficult to conduct this research. It was hard to recruit subjects, he said, because caregivers often have little time for themselves, let alone his requests for their time. Then the pandemic hit, and what might have been lively focus groups turned into Escobar trying to reach people by phone and Zoom. “I wanted 60 to 80 people,” he said. “I got 15, and I was lucky.”

He started his interviews with caregivers by sharing that he understood what they were going through because he’d been there himself. “Then, they’d talk and talk and talk,” he said. “It was like opening Pandora’s box.”

What he found is that many of the caregivers feel obligated to care for their family members. There’s often no discussion of other options. And despite the fact that Hispanic people are at much higher risk of getting Alzheimer’s, they are much less likely to receive proper diagnosis or treatment. Many caregivers told Escobar they didn’t understand what was happening to the people they cared for.

That was true for Barrera, even though she is trained as a health educator. More than a dozen years ago, her mother started “getting ugly” — she’d get upset, wouldn’t let anyone touch her, and refuse to see a doctor. “In our community, for ladies, it can be embarrassing to let a doctor touch your body, that’s what I thought it was,” said Barrera. “I didn’t catch she was going through the illness.”

Many Hispanic caregivers, like Barrera, are daughters, who often carry a burden of caring for both parents and children. Escobar’s study found many are not taking care of themselves. “They burn out, get exhausted and break down,” he said. “They need self-care, activities, a respite, to get away, see a movie, go to dinner.”

“They focus so much on caregiving, they totally neglect their own health,” he said. Maestre said she knows many caregivers who have chosen not to marry because of their obligations, or have died much earlier than expected after neglecting their own health needs.

Dora Griffith, a physician assistant in rural Starr County, where an estimated 20% of the mostly Hispanic population is estimated to be affected by Alzheimer’s, said she has seen more and more of her patients deal with dementia in her 33 years working there. She’s worried about caregivers as well.

“To me, support groups are essential, or respite care,” she said. “Especially if one person is carrying the load.”

That load can be especially heavy here, though many caregivers see what they’re doing not as a burden but as a source of pride. “People report there’s a fulfillment in providing this care, that it’s an honor,” said Resendez. “That doesn’t make it any easier.”

Escobar is hoping his research may make it easier. He’s planning a larger study with more participants to find specific ways to ease the heavy burdens caretakers shoulder.

It’s research Resendez said is long overdue to help people who suffer the consequences of caregiving. Consequences that won’t — with no good treatment for Alzheimer’s in sight — go away anytime soon.

This is part of a series of articles exploring racism in health and medicine that is funded by a grant from the Commonwealth Fund.

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